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12.31.2012

Like much of the rest of the world, the last few weeks have been very full. I think that 2012 marks the best Christmas for our family yet. It wasn't all pretty but there was certainly more ups than there were downs. I feel like I am stepping into 2013 with a pretty optimistic point of view and not just because it can't possibly get worse but rather things seem to be getting better. So here are a few of my favorite things from this holiday season.

Jared took a week off and we got to have an amazing lunch that I got to eat while it was still hot!

We went to our favorite Christmas party, complete with horses and a fire engine.

On the way home we got to stop by the place that I live in my dreams.

We spent eight nights talking about miracles and how God is really super big.

Of course I made food for the occasion.

Chloe enjoyed playing with the nativity that I played with as a child.

We hung our stockings by the fire for the first time.

Claire had loads of fun at her 1st grade class party.

I got the best gift ever, seriously excited to smash something soon.

We had a blast on the train to Christmastown with my parents.

My little brother and I had some fun.

The girls got to open their stockings together, no seizures!

We managed to have a little fun with some of our gifts.

I got to see both our girls sing in the kids choir, rather, Chloe whistled the song while Claire smiled.

We got to have a little more fun with some family that came through town.

To top it all of, Claire started today with an amazing PT session where she did several things that I thought she might have permanently lost. First she maintained on all fours and when the therapist asked Claire if she wanted to work on sitting, she sat up to high kneel all on her own, it's a pretty big deal and she was pretty excited about it. I was too. I hope that you have all had a holiday season that you were able to enjoy and that you have a safe new year.

12.20.2012

I should have expected this, after all, we moved. Miraculously I remembered to notify the company that delivers our diapers of the new address right away so we didn't miss that delivery, just a few days after the move. I somehow managed to keep all of the prescriptions filled, even if that one time we were down to the last mL before I could get over to the pharmacy, we didn't miss a dose. I did have to cancel the eye doctor because I forgot about that appointment and scheduled two others at the same time. It didn't really matter because the nuero called and squeezed us in at that time anyway and we have to cancel the other two appointments too. Then I remembered to follow up on the mount. We have a rolling floor mount and the arm broke so instead of moving it, we shipped it off to be repaired. I had forgotten all about it since the week that we moved Claire's Eco broke and it was out for repair too. I sent instructions with the mount, if you fix it before this date please mail to here, after this date, please mail it here. Since we didn't have to pay to have it repaired they just fixed it and sent it back, to the old address, after we moved. But I had no idea. Eventually I called the company to ask how the repair was going, that's when I found out it had been delivered and that the person at our old address was out of the country, ugh. A week later they returned and surrendered the box with the mount. That's when I followed up on the Eco. It's a mess. Claire's lovely and well meaning teacher didn't know that we didn't use the doctor that she though we used. I didn't find this out until the Eco had been away for almost a month. So we are just starting the process and she will be without her voice for a few weeks more and it's all because I let stuff slip and didn't follow up. I also ordered her gift from American Girl to the wrong zip code and now it's on back order. I have been finding a bunch of stuff that I let slip this week. It all culminated in my crying on the floor in my closet as I looked through papers and couldn't find that one that I needed. I felt so helpless. There is more to do than I can possibly keep up on. Aside from all that business of life, there is the actual care of Claire that is also more than is possible. Sometimes if I am not right next to her to notice when she gets stiff and get her oxygen, she ends up turning purple and and twitching uncontrollably. I might remember to rub her feet well and get the dead skin off but forget to stretch her left side and then she ends up crooked for a few days, it seems to never end. What happened? When we started on this journey I had it all together. She got her Eco in record time, saw each of her specialist regularly, everyone who worked with her was thoroughly educated on each of the details of her care and we kept a schedule for stretching, meds and all that stuff so that nothing got missed. I guess life happened but if I am honest, it's bigger than that. I let go. I stopped grieving by trying to control. Funny thing, when you let go, things slip, that's what happens. In my tears, on the floor, amongst all those papers it was alright. She won't have her voice for Christmas or the new parts for her wheelchair but what we have is enough. I have a picture of Claire in her 1st grade class, she is blurry because her friends are dancing with her and pushing her in a circle. That would never happen if I hadn't let go. The true miracle of it all, that more stuff falls into place than slips through the cracks when you let go and even better, I not too busy to notice. Here is my visual reminder from yesterday, I took Chloe out for hot chocolate and to color. She came to the door with two crayons. I told her we could use a purse and she could bring so more. Here are the contents and it was enough, lesson learned.

12.03.2012

Last Friday it all came together. After a few days of seizures and vomiting Claire was better and back to school. Chloe was happy to be spending time with me and the fresh caught crab was on sale. Suddenly, I felt the huge weight of life lift. As it worked out, Captain Awesome had to work late, which somehow translated in my mind that it was a good night for crab, brie and Champagne once he made it home. It felt really good to celebrate. It felt like November almost did me in a few times, the move, the holiday, the complications from Rett Syndrome. It was almost too much, almost. As we sat and enjoyed our feast we talked about the highs and lows of the month. Jared mentioned that the real great part in the story of the last 30 days was that we didn't compromise the process (hence why he is Captain Awesome). It's a line from the movie 180° SOUTH. It's a discussion about climbing a mountain without shortcuts and the line is something like: if you compromise the process you are an asshole when you start and an asshole when your done. So here are a few highlight from the process, I am grateful for the each of these as they contributed to getting through the times that weren't as pretty.

Claire enjoyed working on some new things at PT.

Chloe figured out how to cut the tops off of strawberries.

She also used a pen to put on her first eye makeup.

I got to enjoy a little of this.

and this...

and this.

I got to enjoy really fresh food.

This turned into a lovely dinner.

Chloe surprised us with a card for our 13th anniversary, WITH OUR NAMES

I got to answer the question why it gets dark with awe inspiring help from God.

Single largest withdrawal from our account ever, to purchase our new place!

Claire walked into the front door after we got our keys!

Friends helped us get all of our stuff into the new space.

It was hard to motivate myself to unpack, I just wanted to sit and watch the birds in the trees.

A few times I escaped altogether and watched more of this.

Chloe helped to kill time at the doctors office.

I was so encouraged that Rick's did a great fundraiser for Katie's Clinic.

I even got in the spirit with my purple hair.

We took the kids to the motorcycle show.

After the show we had an impulse stop at IKEA.

I got special time with this cute face.

It was easy to have fun painting with this lovely lady.

Chloe worked on flying.

We watched the waves and laughed some more.

Claire loved the teeter-totter so much we stayed until the very last light.

About Me

Most of my time is spent getting to know our little gift Chloe and working to enable her big sister Claire. I love motorcycle rides with my husband and walks along the cliffs. I can't believe that God has given me so much, I am just trying to soak it all in.

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As defined by Webster:

or·gan·ic

4 a: forming an integral element of a whole :fundamentalorganic parts of the action — Francis Fergusson>b: having systematic coordination of parts :organizedorganic whole>c: having the characteristics of an organism: developing in the manner of a living plant or animal organic>

1ex·pe·ri·ence

3 a: the conscious events that make up an individual lifeb: the events that make up the conscious past of a community or nation or humankind generally4: something personally encountered, undergone, or lived through5: the act or process of directly perceiving events or reality